I have a lot of pain but I also suffer from a lot of emotional distress.

I am going to have an operation at the end of November but I am very distressed about how I am going to cope emotionally when I am already stressed now. How much support will I have afterwards when I am having to support my disabled niece now and struggling with that. I have been pushed to come and live with her because there is no one else to come and live here and there is no where else for me to go. I have been able to help her somewhat but I am already depressed now as she will not change to help me feel comfortable as she is set in her ways. I try to get her to understand that I live here now also but I have been forced to stay in my bedroom more. I have tried to make a home here for me but I still feel unsupported. How am I going to care for myself as well after the operation. My parents are going to have me stay with them for a week after getting out of hospital but they are in there 70's. I feel that I am going to have to struggle on my own and still watch out for my niece and great niece who really should have a carer but have been knocked back for aid in the past. I am going to have to pull back to myself and start looking for help for myself. I don't know weather I am going to be able to get myself to the hospital and to doctors on my own as I have in the past. I am getting more depressed as it gets closer but more emotionally distressed as well. What do I do now to prepare myself and how am I going to care for myself when I am second to my niece who is getting some support already but how do I get help for myself.
Allan

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25-Nov-2010: ALIF fusion L5-S1. 9 years of Chronic lower back pain. Nearly 18 months of pain across my upper pelvis, through my butt and down my left leg into my foot. Sciatica relieved by surgery.

Re: I have a lot of pain but I also suffer from a lot of emotional distress.

hi. dont know ur living arrangements or financial situation but u could checking with the websites with nannies and au pairs looking for work. most sites also have people looking for adult caregiver positions. most will be willing to negotiate pay depending on ur needs qnd situation. doewnt hurt to check. u cqn get references, background checks, etc. best of luck. i have qn idea hat u qre going through, but luckily i had a lot of family willing to help qnd be there for me. let us know how things turn out. feel free to write if u need any help on the finding a caregiver thing. once qgain. good luck and well wishes.

Re: I have a lot of pain but I also suffer from a lot of emotional distress.

I am sorry for your pain. Are you on disability or have you applied? How did your niece survive before you came into the picture? It sounds like you have no business taking care of someone else when you yourself need help. Learning to live together is hard enough without someone that will not bend or be flexible. It sounds like you have enough to deal with, perhaps you need to look into living at your own place and do something like what gvegaschic said. Just until you are on the mend. Sometimes hospitals have a service that will take you to and from the hospital for appointments and surgery. Also, if you have no way to get home most usually an ambulance will take you home. Let us know if these things are feasible to you. Sincerely, searchin

Re: I have a lot of pain but I also suffer from a lot of emotional distress.

I had problems at my sisters place and she wanted me to move out and at the same time my other sisters daughter asked her carer to move out because he was her ex and was abusing her. So I had no other option but to move here to help clean up the mess that he left behind as she is a mother in a wheel chair. The problem is she expected me to behave in the same fashion the ex did. He sat outside and read his book and smoked of he stood in front of the TV and played games all night on the internet then retrieved into the back room to sleep all day. It was a very sick relationship but she got stuck in it and just excepted I would be out of her way. Now she won't let me cook at night as she usually cooks then spends all night in the kitchen cleaning up. But the kitchen is right next to my room. So she is banging pots around and dropping things etc etc all night until she goes to bed. I can't watch tele in the afternoon because the 4 year old must watch all her shows including the Simpson's. So I am expected to just stay out of the way and when I explain to her I can't she tells me that she has her route-en and will not change. So I am delegated to the back room to ware ear plugs. When leiah is not at day care her mum plays with her all day as a child might only she is 3 times loader and it is unnatural and unusual because of her disability. She has lost part of her brain she doesn't behave like a normal adult. she is more like a child grown up too quickly.
As mush as I love her and want to make her life comfortable and I want her cared for, I am not the person to look after her needs. I am struggling caring for myself. I don't know how to budget and I over spend on my hobbies at times and I am used to dealing with those things myself. I have a bad memory as well and I am not used to living with small children. I am in constant pain 24/7 and can't get around the shops completely for myself and she has someone to take her but she quite often buys inappropriate groceries. So I can't expect her to do any of my shopping. I really need to go and do my own.
I am sorry to go on but I am so frustrated that I don't feel at home here, I need my own place. but haven't been able to afford it. But I might have to just do it some how. But then if I move out unless she can find someone too move in her she will loose this house (where she has lived most of her adult life) as she will not be entitled to have this many rooms. This is a housing department home built for her. But they will move her out If I go. It is so frustrating I am getting depression back again and am worrying myself sick about it all as I am not getting any help for my issues. Everything is about her and I have to give her all my effort as well, leaving me in more pain.
It is not good for me and I will not get well here. I just don't know what to do.
Allan

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25-Nov-2010: ALIF fusion L5-S1. 9 years of Chronic lower back pain. Nearly 18 months of pain across my upper pelvis, through my butt and down my left leg into my foot. Sciatica relieved by surgery.

Re: I have a lot of pain but I also suffer from a lot of emotional distress.

Allanbruce,

Hi, I'm a bit familiar with you as we have both been on these boards many years. I'm sorry that you're having such a tough time. I'm honestly not sure why you took on this responsibility in the first place as it was so clearly not within your range of abilities. I know you feel that if you leave you will be causing harm to your niece, but the current situation seems harmful in itself to both of you. Since she is on government assistance perhaps she has a caseworker that you could let know of her situation that might be able to help find a caretaker for her. I definitely think that you should try to find your own place, as you have no business in your current mental/medical shape trying to take care of someone with her difficulties. You should focus your attentions on yourself and getting ready for the upcoming surgery, so that you can recover and heal well.

Re: I have a lot of pain but I also suffer from a lot of emotional distress.

I really don't feel that I should be here either but I was pushed into it. My older sister asked me first to stay weekends at my parents and then it was mentioned to me that if someone didn't move here with Elisa she would loose her home. So I said I would try but my sister said that I had to move out because she had plans for my room, so I had to move pretty much strait away and here was the only option at the time. Since I moved the situation became obvious that it wasn't a good idea but I have no options. I have been saving for the surgery and the money would all be taken up in moving and there would be nothing left for me to contribute towards my recovery. My younger brother is helping me with the surgery costs but I think I would be pushing it to tell him I had spent all my money and he had to pay for everything. But if things get really bad I will just have to do it somehow.

Accommodation anywhere now has gotten very expensive and I don't know how I would be able to afford it on the pension without sharing with someone. It costs me a lot to keep the health insurance and run a car with it's insurance also.
I think I will have to stay until after the surgery at least. I might be able to say at a hospital to do my rehabilitation because I have no one to assist me. I have heard of others doing it that way, so I am going to ring the local hospital and see what is available.

I am not going to support Eliza now as she will have to sort her own things out for a while. She should be ok as we found her a social worker who will now help her in her application for a disability package. I am going to a couple of appointments with her but she has sorted the transport out with the social worker so I only need to be there to help make sure the doctors get the full picture as she hides things as she doesn't like people to think she can't look after her daughter. After that I am pulling back and looking after myself.

For me now just going out anywhere is painful so I am mostly confined to my room and sometimes the lounge but that is their area so I have my own TV in my room.Thankfully I have another 7 weeks to make arrangements. Also there is a spare bedroom here for anyone to stay if we need help here and can find a helper. I am concerned about meals, showering, getting to appointments, and shopping, etc. So I have to find out who is going to help me with those things and if my parents can do anything for me. But they can't do a lot. . But I am nervous.

I have been having some pain today in my right foot but it doesn't surprise me as the pain I have in my buttocks is right across both sides. But it is the first time I have had it in my right leg. It was in my heel so I am not positive it is from my back but that is always something that concerns me. My doctor didn't like that it had travelled to my left foot. Oh well I have to be patient and careful I don't hurt myself any more.
Allan

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25-Nov-2010: ALIF fusion L5-S1. 9 years of Chronic lower back pain. Nearly 18 months of pain across my upper pelvis, through my butt and down my left leg into my foot. Sciatica relieved by surgery.

Re: I have a lot of pain but I also suffer from a lot of emotional distress.

Have you ever been able to live on your own or have you always required a helpmate as well? You mention not being able to shower, shop, go out, etc. Have you thought that it might be prudent to put off the surgery for now and get yourself situated in a home of some sorts first? That seems like the most important thing right now....you have to have a place to live.....

Re: I have a lot of pain but I also suffer from a lot of emotional distress.

In a perfect world I would find a lovely caring person to fulfil Eliza's needs and allow me to find a place of my own and then I wouldn't have enough money to rent somewhere on my own but as I have mentioned Eliza needs to get a disability package to allow her to pay someone to assist her in the things that she can't do and take her to appointments and physio such as in hydro therapy. Also if you ask her what she needs she will tell you no I can do most things. Well she can but at the level of a 12 year old maybe. And because she has a daughter she hides any problems from everyone.
Myself, everyone keeps telling me I should stay here the rent is cheap and I won't find anywhere to live now because the rent is to expensive. Well that may be right but how am I going to get well if I am so unhappy. I am not well now and I am getting stressed so you are probably right that I should find a place of my own and get in place some services for me but I don't know how that will happen so I will be stuck here and maybe I will spend some time at my parents re-cooperating after hospital. And deal with it. I will forget it all now as there is nothing anyone can do for me. I shouldn't be upsetting anyone including myself so I will drop it now and just let things settle otherwise I will get worse worrying about it all.
Allan

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25-Nov-2010: ALIF fusion L5-S1. 9 years of Chronic lower back pain. Nearly 18 months of pain across my upper pelvis, through my butt and down my left leg into my foot. Sciatica relieved by surgery.

Re: I have a lot of pain but I also suffer from a lot of emotional distress.

I think that I am going to be ok here as we are getting on well and I have found ways around the problems. I use ear plugs when I am annoyed by their noise or if I want an afternoon sleep. I also found out I can get someone once a week to do my sheets, vacuum and clean the bathroom. I have the bathroom strait across the hall with my own toilet. I also think I am teaching Eliza a bit about cooking and caring for cooked food so hopefully she will include me in dinner at night or I can have a frozen meal. Also I hope I am going to be able to look after myself for most other meals.
As far as appointments I can have half price taxi vouchers or another transport option is available. Otherwise I will just wing it.
I'm going to stay with my parents for a week after I come out of hospital but dad is also booked in for fairly urgent keyhole bowel surgery. Hopefully it all works out ok and we will help each other when we can.
I don't have any plans for after that as I have a debt to pay to my brother which will take two years and the rent is only $70 a week so I can't afford any more for some time. Hopefully I will be able to do some part time work later and who knows where I will be. As I said I will just play it by ear as there are no other choices.

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25-Nov-2010: ALIF fusion L5-S1. 9 years of Chronic lower back pain. Nearly 18 months of pain across my upper pelvis, through my butt and down my left leg into my foot. Sciatica relieved by surgery.